What did attendees think of the LEARN local events?

At the end of October, MND Scotland hosted the last of our inaugural Lived Experience and Researcher Network (LEARN) local events. These events took us to Aberdeen, Edinburgh, Glasgow and Dundee where we were joined by an incredible 98 attendees over the four locations. The events provided an opportunity for people affected by MND to learn about research taking place locally; to ask researchers about any questions they had; and share their lived experience. Our research team truly appreciated everyone joining us at the events and felt incredibly lucky to have had the opportunity to meet so many of you and hear your stories. 

To round up the local events our Research Lead, Paul Jensen, has brought together some quotes from attendees, who kindly shared with us their thoughts on what the events meant to them. 

Aberdeen 

Tatiana Langerova, a PhD student at the University of Aberdeen, is investigating the role areas of our body besides the brain and spinal cord play in neurodegenerative diseases. She said: “Attending the MND Scotland LEARN event was very beneficial for me. As a researcher, it was enriching to meet people with MND and carers, to learn about their perspective on the disease. Further, I think the event was a good way of building a local MND community consisting of people with MND, carers, clinicians and researchers alike.”  

Ken McEwen and his wife Lesley attended the Aberdeen event. Ken said: “The MND Scotland LEARN event in the Aberdeen Science Centre was a great opportunity for the MND community to meet with researchers and hear about the local research efforts to combat the disease. We heard how cancer research had led to early diagnosis and, consequently, better outcomes for patients. The teams at the University of Aberdeen are working to identify similar early indicators of MND. One particularly promising study outlined at the meeting was into proteins found in the gut that appear long before the brain is affected. No matter how hard you try to stay positive, life with MND can feel a bit hopeless with no real effective treatments, let alone the elusive cure. So, it was good to get this insight into the efforts being made to find a breakthrough. The researchers spoke of the event’s value in giving faces and voices to the people they are striving to help.” 

Dundee 

Melissa Parra, a PhD student at the University of Dundee, is using fruit flies to investigate the impact of faulty TDP-43 protein clumps which are found in ~95% of MND cases. She said: “The MND Scotland LEARN event offered a meaningful opportunity for people affected by MND to gain a deeper understanding of MND and to feel reassured that many dedicated scientists are tirelessly working behind the scenes towards a cure. For researchers, this event serves as a vital reminder of our motivation: we are not merely working on a disease but working for people—people with loved ones, friends, families, and meaningful lives. The LEARN event was carefully organized to create a warm and welcoming atmosphere, making it a safe space where both people affected by MND and researchers could connect, share, and educate each other.” 

Pauline Neeson, attended the Dundee event with her husband Gibb. She said: “This was my husband and I’s first event following my diagnosis at the end of March. We found the information and the enthusiasm of the speakers and researchers very refreshing. It was interesting to learn of the connection between MND and other illnesses and the shared research for a cure for these illnesses. Following this visit, I have now decided to look into research in more detail and into taking part in any future trials.” 

Dr Ian Grant, a retired orthopaedic surgeon, said the event was “An enjoyable and informative afternoon which certainly gave me, as a long retired and not very knowledgeable doctor, a much better understanding of some of the issues at cellular level which may hold the key to effective treatments. It was not only the expertise of the researchers which impressed me, but also their enthusiasm and I welcomed the opportunity to meet and share my MND journeys with some of them.” 

Glasgow 

Frank Egan, who attended the Glasgow event with his wife Liz, said “This was my first attendance at any MND Scotland organised event as I buried my head in the sand and lacked confidence meeting other people with MND. I was impressed with the organisation, venue and quality of information shared by the various research team presenters.  In particular, the event team were so welcoming that my nerves and trepidation quickly disappeared. The format and schedule were just right which allowed break out Q&A time with others.” 

Graham Douglas, with his wife Morag and daughter Lou, attended the Glasgow, Dundee and Aberdeen events and had this to say about them: “From attending many of the LEARN events I feel that they were all educational and very interesting. There were talks on research into different potential ways of diagnosing MND from a simple poo on a stick test to the use of high-resolution MRI imaging. There were also talks about research using the humble fruit fly and some using lab grown stem cells to analyse enzymes and look for therapies faster.  The events were a great opportunity to meet other people with MND and their families as well as speak to the researchers.” 

Edinburgh 

Katie Syme attended the LEARN Edinburgh event and said this about it: “The LEARN event was a great way to hear what local researchers were looking into for MND diagnosis and treatment. They explained things in a way everyone understood, and showed the wonders of medical research and what some funding was being used towards. I had cared for someone with MND, so it was also a way to meet other people in a similar situation and hear the different experiences people had. Meeting with some of the MND Scotland team let me put faces to names, and also discuss my own experiences in seeing and caring for a loved one with MND and where there were areas that could be developed or improved in the future.” 

Abby O’Sullivan is a PhD Student at the University of Edinburgh, carrying out research into MND. She said: “The unique, informal setting of the Edinburgh LEARN event created a great sense of community. As a researcher, it’s really important to have an opportunity to share our thoughts and findings with the wider MND community, and also receive important input from those affected by MND, which LEARN provided a great platform to do. I look forward to future events!” 

We are thrilled to hear that so many of those who attended felt they got something positive from the event. The benefits of the events, fed back to us from people affected by MND and the researchers, is what we were hoping to achieve with LEARN, and this was only possible because of the generous engagement, enthusiasm and openness of the MND community in Scotland.  

If you were unable to make it on the day you can still learn about the research which was presented at the events. We are working with the researchers to record their talks online and have begun uploading some of these on to our YouTube channel.